We’ve now had a week to process everything that happened at Hopkins last Monday. I understand where Dr. Groves was coming from, and I really do think we’ll all feel better once the AVM is gone and we aren’t on stroke-watch any more. I really hate being on stroke watch for a child. It’s not the natural order of life, and the symptoms are scary. I just wish she had a better way of presenting that in clinic. But I also know that as much as we dislike her bedside manner, her surgical skills are probably impeccable.
Tuesday we went to Christopher’s pediatric opthalmologist, Dr. Chaudri, to have his optic nerves re-evaluated. Luckily, they’re in perfect condition, and he passed his color vision and strabismus (lazy eye) exams beautifully. But she did discover that his right pupil is slightly larger than his left now. She tested it several times, in light and dark, and during the transition, to be sure. Then she asked for his lead surgeon’s number so she could make sure they’re aware.
Turns out, Groves’ PA saw it in clinic Monday, so they are. I emailed his surgical team the next day just to make sure it got into his file, and Stephanie, the PA we usually work with, let us know. I think this helps explains part of Groves’ demeanor in clinic. My labrador, Sunshine, also decided a few days prior to the Hopkins visit that he really didn’t want to go on walks with the boys anymore—except that he’ll let my oldest, Alexander, take him without balking. We’re pretty sure he can smell that something is different. He exhibited similar behavior in April when the headaches were really scary. The change in Christopher’s pupil is subtle, but along with the increase in his headaches and Sunshine’s behavior, we’re fairly certain the pressure inside Christopher’s head is higher than it should be. A few days ago, he told me he wasn’t dizzy per se, but all his cells felt like they were spinning. Two nights ago, his feet were numb. Last night, he said his fingers felt like they were hot, except they were cool to the touch.
I called Dr. Bernier, his headache specialist, yesterday, because the headache was so bad. Because his gut has also been upset the last week and he had a low grade fever for several days prior to that, she was hopeful he has a gastro bug that’s about to run its course. She reminded me that any illness will make his headaches worse. But she gave me the main line phone number to Children’s National Medical Center and told me to ask for the on-call neurologist if I had any other questions at any time of day. I didn’t think to tell her about the weird sensations he’s been having while I was on the phone with her, but when I was reviewing stroke symptoms online, “hallucinations” show up under “altered mental state”. So I called Children’s National this morning. The neurologist says they aren’t hallucinations, that the pressure inside his brain is too high, and the sensations he’s experiencing are indicative of blood flow being altered. She wants him imaged, and asked us to bring him into the main campus in the Capitol.
We beat traffic driving into the District, but are now in the thick of it for the final few miles.
Update 8/12/2016: The ER team did not mess around, they were in complete agreement that he needed a CAT scan. Dr. Bernier had also put a note in the system for him to be direct-admitted for a scan if he showed up. Luckily, it was clear, which gives them 90-95% confidence no bleeding has occurred. The neurology team came downstairs to evaluate him and decide whether they wanted to rule out the other 5-10% with additional tests. And then they went to pow-wow to see if they couldn't come up with some kind of AVM-safe pain control to attempt while they kept him overnight. On the one hand, they decided additional tests weren't necessary. But, as we're getting used to hearing, there's really nothing they can do for pain until the AVM is gone. They do think he had a gastro bug. And where a gastro bug takes most of us from a level 1 to a 3, any illness will take him from where he is living at a 7 up to a 9. Hence the scary symptoms. Although, it took them 5 hours to make all those decisions, and unfortunately he had a really painful IV this time around. But he was discharged and sent home, with strict orders to come back if things escalate again. Luckily, things have stayed pretty boring since then.
Update 8/12/2016: The ER team did not mess around, they were in complete agreement that he needed a CAT scan. Dr. Bernier had also put a note in the system for him to be direct-admitted for a scan if he showed up. Luckily, it was clear, which gives them 90-95% confidence no bleeding has occurred. The neurology team came downstairs to evaluate him and decide whether they wanted to rule out the other 5-10% with additional tests. And then they went to pow-wow to see if they couldn't come up with some kind of AVM-safe pain control to attempt while they kept him overnight. On the one hand, they decided additional tests weren't necessary. But, as we're getting used to hearing, there's really nothing they can do for pain until the AVM is gone. They do think he had a gastro bug. And where a gastro bug takes most of us from a level 1 to a 3, any illness will take him from where he is living at a 7 up to a 9. Hence the scary symptoms. Although, it took them 5 hours to make all those decisions, and unfortunately he had a really painful IV this time around. But he was discharged and sent home, with strict orders to come back if things escalate again. Luckily, things have stayed pretty boring since then.
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